Steering Committee
OPTIMIZE DMD is guided by a multidisciplinary Steering Committee that brings together expertise in endocrinology and bone health, neuromuscular and rehabilitation medicine, and patient advocacy. The Steering Committee provides strategic direction for the consortium and works closely with the OPTIMIZE DMD Working Groups to establish priorities, deliverables, and timelines. Through ongoing collaboration with Working Group members, the Committee supports the development and timely delivery of initiatives that advance the goals of OPTIMIZE DMD and improve care for individuals living with Duchenne muscular dystrophy.
Pat Furlong
Pat graduated from Mt. St. Joseph College in Cincinnati, Ohio with a BS in Nursing. She attended Graduate School at Ohio State University. While attending Ohio State, Pat spent most of her time in the Medical Intensive Care Unit. After marrying Dr. Tom Furlong, Pat ran the Renal Dialysis Unit and Patient Education Center at Akron General Hospital. With four children, Pat continued her career on a part-time basis, teaching patient education classes at Middletown Regional Hospital. Pat Furlong is the Founding President and CEO of Parent Project Muscular Dystrophy (PPMD), the largest nonprofit organization in the United States solely focused on Duchenne muscular dystrophy (Duchenne). Its mission is to improve the treatment, quality of life, and long-term outlook for all individuals affected by Duchenne through research, advocacy, education, and compassion. Read more
Dr. Leanne M. Ward
Dr. Leanne Ward is a Professor of Pediatrics in the Faculty of Medicine at the University of Ottawa, where she holds a Tier 1 Research Chair in Pediatric Genetic and Metabolic Bone Disorders. Dr. Ward is the Scientific Director of The Ottawa Pediatric Bone Health Research Group at the Children’s Hospital of Eastern Ontario (CHEO) Research Institute, Medical Director of the Pediatric Endocrinology-Osteology Clinic at the Children’s Hospital of Eastern Ontario, and a pediatric endocrinologist-osteologist in the CHEO Division of Endocrinology. In 2014, she founded The Canadian Consortium for Children’s Bone Health, a national, multi-disciplinary network of clinicians and scientists that fosters health professional education and research in childhood-onset bone disorders and The Canadian Alliance for Rare Disorders of the Skeleton (a patient advocacy initiative). Dr. Ward’s research program is dedicated to the diagnosis and treatment of childhood-onset bone disorders including skeletal dysplasias, bone fragility and mineralization disorders, and osteoporosis due to chronic illnesses. The Ward lab has a particular focus on therapeutic trials in childhood-onset bone disorders, emphasizing skeletal health outcomes quantified through central skeletal imaging, and the study of novel drugs to mitigate the functional consequences of rare bone diseases.
Dr. David Weber
Dr. David Weber is an attending Physician in Pediatric Endocrinology and the Associate Professor of Pediatrics, The Children’s Hospital of Philadelphia (CHOP) and the Perelman School of Medicine at the University of Pennsylvania. Dr. Weber is the Medical Director of the Center for Bone Health and Research Director of the Nutrition and Growth Lab at CHOP. He is passionate about improving the endocrine and bone health care of people with DMD and has participated in multi-disciplinary neuromuscular clinics for over a decade, first at the University of Rochester and now at CHOP.
Dr. Weber’s research group is actively studying the impact of DMD and other chronic diseases on bone health. He also has an interest in rare disorders of bone mineral metabolism and is currently working on studies in conditions includingENPP1 and CYP24A1 deficiency.
Dr. Weber is currently co-chair of the Bone and Mineral Special Interest Group of the Pediatric Endocrine Society and a member of the Professional Practice Committee of the American Society of Bone and Mineral Research (ASBMR). Dr. Weber is a member of the Steering Committee, Co-Chair of the Adrenal Working Group, and a member of the Osteoporosis Working Group.
Dr. Sze Choong (Jarod) Wong
Dr. Jarod Wong is a Senior Clinical Lecturer/Consultant Paediatric Endocrinologist based at Human Nutrition, College of Medicine, Veterinary and Life Sciences at the University of Glasgow, with clinical commitments at the Department of Paediatric Endocrinology, Royal Hospital for Children, Glasgow, United Kingdom. Dr. Wong leads the Bone, Endocrine, Nutrition Research Group in Glasgow (BEN-G).
Dr. Wong is the Lead of the Bone and Endocrine Working Group and Co-Lead of the Nutrition Working Group for DMD Care UK, a national collaboration between clinicians and patient group (Duchenne UK) aimed at developing and implementing standards of care across the UK. Dr. Wong is a Steering Committee Member of DMD Care UK. Dr. Wong is the Chair of the Clinical Committee for the British Society for Paediatric Endocrinology and Diabetes and sits on the Clinical Committee of the European Society of Paediatric Endocrinology.
For nearly 20 years, Dr. Wong’s research has primarily focused on the impact of chronic disorders, suboptimal nutrition, and glucocorticoid use on growth, puberty, and musculoskeletal outcomes.
Dr. Wong is a member of the OPTIMIZE-DMD steering committee; co-chair of the osteoporosis working group; and a member of the adrenal insufficiency and weight management working group.
Dr. Susan Apkon
Dr. Susan Apkon, MD is the Fischahs Chair in Pediatric Rehabilitation at Children’s Hospital Colorado (CHCO) and Professor and Executive Vice-Chair in the Department of Physical Medicine and Rehabilitation at the University of Colorado School of Medicine. Dr. Apkon has focused her professional career on the care of children and young adults with neuromuscular conditions. She co-directs the Neuromuscular Program at CHCO and provides clinical care in the many multidisciplinary clinics in that program. As a Rehabilitation Medicine physician, Dr. Apkon focuses on the physical and cognitive impact of the specific neuromuscular condition with a goal of maximizing a child’s function abilities.
Dr. Apkon’s academic pursuits focus on the advancement of novel treatments for children with Duchenne muscular dystrophy and Spinal Muscular Atrophy. She has started two clinical trials programs. The programs have allowed children with these rare and progressive genetic conditions to participate in trials providing them with early access to potential life changing and life saving drugs prior to FDA approval.
Dr. Apkon has served the greater community in different capacities to support national organizations including Muscular Dystrophy Association, Parent Project Muscular Dystrophy, and Cure SMA. She is currently a Board Director of the American Board of Physical Medicine and Rehabilitation
Dr. Meilan Rutter
Dr. Meilan Rutter is Professor of Pediatrics in the Division of Endocrinology at Cincinnati Children’s Hospital and the University of Cincinnati. She completed her training in pediatrics and pediatric endocrinology in the United Kingdom, New Zealand, and the USA, before her appointment as a pediatric endocrinologist at Cincinnati Children’s in 2005.
She provides care for children, adolescents and young adults with a wide spectrum of endocrine conditions, with a clinical and research focus on improving the health of people with endocrine complications associated with Duchenne Muscular Dystrophy (DMD). She has served as the primary endocrinologist for the comprehensive interdisciplinary Neuromuscular Center at Cincinnati Children’s from 2006 and is also a member of the Center’s Leadership Committee. She has contributed to international awareness of the importance of proactively addressing endocrine and bone health issues in people with DMD and has conducted research and co-authored multiple publications in this field. She has been part of the OPTIMIZE-DMD Consortium since its inauguration in 2023.
Within OPTIMIZE-DMD, she serves on the Steering Committee, as co-chair of the Growth and Puberty working group, and as a member of the Weight Management and Bone Health working groups
Dr. Hugh McMillan
Dr. McMillan is a Pediatric Neurologist with specialization in Neurophysiology and Neuromuscular medicine at the Children’s Hospital of Eastern Ontario. He is a Professor in the Department of Pediatrics at the University of Ottawa and a Clinical Investigator at the CHEO Research Institute.
He is the Division Chief of Neurology at CHEO and the Program Director of the Pediatric Neuromuscular Fellowship Training Program at the University of Ottawa. He is a site primary investigator for clinical trials and has been the site lead of over 20 regulated clinical trials.
He is a member of NMD4C a Canadian Neuromuscular Disease Consortium, the Canadian Pediatric Neuromuscular Group (CPNG) and the Pediatric Lead for the Canadian Neuromuscular Disease Registry
He offers advice to the OPTIMIZE DMD Consortium as it pertains to Neuromuscular medicine and the care of children and young adults with neuromuscular disorders
Dr. Jaclyn Tamaroff
Jaclyn Tamaroff, MD, MSCI is a Assistant Professor of Pediatrics, Division of Pediatric Endocrinology and Diabetes, Vanderbilt University Medical Center.
Dr. Tamaroff’s research program focuses on the interaction between glucose and insulin metabolism and cardiac disease in neuromuscular disorders, specifically Duchenne muscular dystrophy (DMD) and Friedreich’s ataxia (FRDA). She is currently investigating the utility of wearable technology in DMD to assess glycemia, activity, heart rate, and sleep and the relationship between these parameters. Additional ongoing studies are evaluating insulin sensitivity in DMD and the potential relationship to cardiomyopathy. Finally, she will be leading future studies that explore the use of weight-management medications in individuals with DMD.
Dr. Tamaroff was a member of the FRDA Consensus Clinical Management Guidelines Writing Committee (2020-2022) that published updated guidelines for FRDA. She was also a member of the National Institute of Neurologic Disorders and Stroke (NINDS) Common Data Elements Mitochondrial disease, Endocrinology subgroup (2022-2023). Dr. Tamaroff is a member of the OPTIMIZE DMD weight-management working group.
Dr. Nora Renthal
Dr. Nora Renthal, MD, PhD is an Assistant Professor of Pediatrics at Harvard Medical School and an attending physician in the Division of Endocrinology at Boston Children’s Hospital. She serves as the Medical Director of the Bone Health Program and Director of the DXA Program for Pediatric Bone Density at Boston Children’s Hospital.
Clinically, she is an attending physician in endocrinology and directs key programs related to bone health and pediatric bone density. She leads endocrine care in the PPMD Certified Duchenne Care Center at Boston Children’s Hospital. Dr. Renthal’s research has two primary branches: basic science exploring the genetics of growth plate chondrocyte maturation and health equity research focused on understanding and improving sexual health care delivery for young adults with musculoskeletal disabilities.
Dr. Renthal chairs the Boston Children’s Hospital Collaborative for Disability Health Equity and Inclusion (CDHEI) and the Disability Health Equity Research Collaborative. She is the founder of the Endocrinology Network for Diversity, Openness, Awareness, Respect, and Community (EndoARC). As co-chair of the OPTIMIZE DMD Sexuality and Fertility Working Group, Dr. Renthal focuses on developing and refining care protocols related to sexual health and fertility for individuals with Duchenne Muscular Dystrophy.
HQ Team
Dr. Roozbeh Pourziaei Manesh
Dr. Roozbeh Pourziaei Manesh, PharmD, MBA, serves as Secretariat to the OPTIMIZE DMD Steering Committee, supporting consortium-wide coordination, Steering Committee activities, and collaborative initiatives across the network. He contributes to the coordination of working groups and research initiatives aimed at advancing clinical research and improving care for individuals living with Duchenne muscular dystrophy.
Alongside his leadership and coordination role within OPTIMIZE DMD, Roozbeh is a clinical research professional at the CHEO Research Institute, where he supports the coordination and operations of multi-centre clinical research studies, with a focus on central imaging and pediatric bone health. He holds a Doctor of Pharmacy degree from Shahid Beheshti University of Medical Sciences in Tehran and an MBA from the University of Ottawa’s Telfer School of Management. His professional background spans pharmacy, clinical research, and research operations across academic and clinical settings. His work is driven by a commitment to connecting people, research, and operations to help translate collaborative efforts into meaningful improvements in patient care.
Dr. Mei Wang
Bio coming soon!
